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NIH Day 4: Snapped, Tested, Zapped & Sampled

Today started with a wise decision to say screw it and eat the chocolate cereal for breakfast. Coffee and chocolate are important food groups, after all!  

We did our usual walk from Safra Lodge to Building 10, it looked rather pretty with the clearing after the storms last night-but I couldn’t decide whether these benches were knocked over by the wind or not.  

   
First thing in Building 10 this morning was medical photography where the photographer took a bunch of slightly strange medical photos. Then it was off to a borrowed room in the “Day Hospital” for a ridiculously long neuropsych eval and way more IQ testing than I ever hope to do again. We ordered lunch to come up to us but mine took 2 hours (apparently that is not normal!)  

After we finally finished the neuropsych stuff we literally dashed to EKG to get that over with, then went to neurology (I think!) for a nerve conduction test, which sounded worse than it was – kinda felt like being shocked a few times (if one were to get shocked in the face, that is).

  
 Walking through Building 10 I love the architecture and the light!
Last stop of the day was again in a borrowed room at the Day Hospital, where I did the big wrap-up meeting today instead of tomorrow as one of the researchers won’t be in then. Basic findings were indeed that I have a pretty classic case of Moebius syndrome (phew! I was pretty sure but can only imagine people thinking they have one thing but being told they don’t!). Recommendations were to think about orthodontics, to get a shoe lift ASAP because apparently my legs are drastically different lengths, and to get my blood test readings looked at by an Endocronologist. Besides that everything else looked good.

Last thing of the day was a skin biopsy, so that they can get a different kind of cell from me and use it to create cell lines. Apparently you can get a different type of cells from skin that might be more useful for Moebius syndrome. I find that both slightly scary and fascinating! I was plenty numb so didn’t really feel much beyond pressure although it is starting to ache a bit now that the numbness has worn off! Back to the lodge for take-out again.

Just a few more appointments tomorrow then we’re done!  

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2 thoughts on “NIH Day 4: Snapped, Tested, Zapped & Sampled

  1. Kathleen says:

    I’ve been following your adventures this week! I really hope to find the time to participate. Thank you for doing this for the Moebius community! It sounds like it’s been a helpful experience with lots of insights from experts. For some reason, I forgot about that aspect, but it’s definitely a draw!

    • You definitely should think about it! I think Carol (the Nurse Practitioner coordinator) will be contacting you – there are a few researchers doing stuff that’s somewhat similar to yours but she doesn’t want to overstep on what you’re doing. I did a bit of slightly creepy and surprisingly hard gender identification with disembodied faces 😉

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